May Time Capsule

A Moment in Time...

JP

What is your favorite...

COLOR:

My favorite color is black like Mickey. I like Mickey with his magic clothes on and his magic hat on. Where do you see Mickey? I see him right here in this book. Is he also on your V.Smile? Well, you're right but I'll check in this book. (flips through book for Mickey Mouse). Oh I'll find...that's the Mickey! (He's flipping through his new favorite book--Disney Storybook Collection Volume 2)

BOOK :

My favorite book is the Disney story book. Do you have a favorite story in that book? My favorite story is that movie. My favorite story is the Mickey Mouse magic movie. I haven't seen that movie, have you? Nope. I sure haven't. Maybe it will be at the library? I'll have to check! Good thinking Mommy!

MOVIE:

My favorite movie is Nick Jr and Disney channel and Playhouse Disney of Disney channel. Do you a favorite show on one of those? My favorite movie is Rollie Pollie Ollie. Cool! Have you seen that on the TV or the computer? Computer. Do you have a favorite movie on the TV? Well, yes. But my favorite movie is the Backyardigan's Racing Adventure. Hmm. I think that is on the computer too. Maybe I haven't seen that movie before. Do you? Nope. But I'll show you how. No, we're not going to play on the Nick Jr website right now. But I want to play it! But I'll show you how to spell nickjr.com. Just click here. But I'll show you how... Ha Ha! Silly old Mommy! I'll show you how to spell www.nickjr.com.

FOOD:

Well, my favorite food is ice cream! Cool ! Ice cream! I like vanilla ice cream. I like to eat some at a restaurant. Did you eat some recently? Yes, I did. I went to the ice cream shop with Grandma and her friend Daddy and T too. Was there anyone else? Well sure... (no answer) Was Mommy there? Yeah. (ouch! I see how I rate!)

DRINK:

My favorite drink is juice. Oh, what kind of juice? Ice cream juice or strawberry limeade juice when we go at the strawberry limeade shop with Daddy! (i.e. Sonic's Strawberry Limeade...mom's ice cream juice is a Reeces sonic blast)

TOY:

My favorite toy is the new Superman. What's the "new Superman"? Tomorrow I'm going to get that at the store. And I'll get my new costume. What costume is that? It was from Walmart that morning. What does the costume look like. The costume looks like that Superman. (points(!!) to a Superman book from the newest movie) Tomorrow I can try that costume on. (I think we have seen costumes with the "built in muscles".) Oh, I don't know buddy. I like the Superman costume you already have. But tomorrow I can wear that in the next morning?

LETTER:

My favorite letter...hum. Hey! How about we make words. Yes, we are. But it isn't crooked. We better get different...this piece of paper to get that. What is you favorite letter, buddy? My favorite letter is a "A". Why A? Because I like to get the "a" for apple. Do you like apples? Oh, but we do have ice cream at the restaurant and the next morning we'll get some ice cream. Oh, I don't think ice cream is a morning food. But it's good. Maybe we can try it in the next morning!

NUMBER:

But my favorite number is 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. Any more? 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. 25. 26. Oh! I hear the Backyardigans! I got to go watch my movie! (T is still finishing lunch while we answer our questions on the computer and Nick Jr is on the TV. JP heard the Backyardigans music in the background. I guess that means we are done for now!)

SONG:

Well, my favorite song is...like the Bob the Builder theme song. Oh, that is new a favorite song. It was on the TV when I was watching Bob the Builder Teamwork. Is Bob a nice guy? Yes. He's a builder and he fixes anything like Handy Manny. (Handy Manny is a Playhouse Disney series about a guy who fixes things) Cool! I like Lofty. Lofty? What does Lofty do? He rolls the gate and Bob's boots. (????)

My additions:

JP has really had a great month. Of course he still has his "topics" of interest. Lion King has faded. Cars is a distant memory. Pooh has even faded. However, he did ask to read a Pooh book last night and I did just check out Lion King 1 1/2 and Lion King 2 from the library. We'll see if these kick his fixation back into over drive.

He is really into Superman right now. Most of our video viewing has been geared more towards T's preferences. We've watched a lot of Baby Einstein videos and Wiggles. Personally I don't mind the Einstein videos because JP "narrates" the whole time and uses pretty good sentence structures to tell me what is happening on the screen. Plus his modeling of the words is enjoyed by T who is fascinated by everything big brother can do! I've enlisted JP in helping teach T to talk. JP seems to take this task serious but doesn't go out of his way to practice with T.

Both boys particularly like Baby Newton Discovering Shapes and Baby's Favorite Places First Words Around Town and Baby Wordsworth First Words Around the House. Today in the van T said "cat" when they showed the cat picture! JP excitedly exclaimed, "T talked Mom! T can talk now!" It was so cute. And I swear JP said it with a sense of pride like he made it happen!

JP's biggest fixation has been using Mommy's computer to play on the Nick Jr website. When forced to play on his computer he will complain that the computer is broken because it is so much slower. He claims something is "crooked" but we aren't sure what he means. Now that morning preschool is over he can actually watch some of these shows. Many of the shows (like the Backyardigans) he has only seen on the computer. I 'm not sure that he realized that they really were TV shows.

Bed time books:

Baby T

FOOD: donuts, fruit snacks, cheese, applesauce, yogurt, chicken fingers, ramen noodles, green beans, oranges, peaches, macaroni and cheese, Hamburger Helper Cheesy Beef Taco, pickles, popcorn, potato chips, summer sausage, ham, crackers, E.L Fudge cookies -- VIRTUALLY ANYTHING YOU PUT IN FRONT OF HIM!

DRINK: I got him to drink strawberry milk for a few days (only because JP was)but that seems to have faded. Essentially he is a juice guy. I am working on watering it down to the point that he'll agree to drink plain water. He still loves straws and essentially wants whatever big brother is drinking.

MOVIES: #1 Any Wiggles, #2 Any Baby Einstein video.

TOYS:
-Climbing is better but that is possibly because we no longer have anything climbable.
-Grabbing at anything within reach: curtain pullies, light switches, door handles.
-The real phone...not interested in the fake kiddie phones. (Even says hello...blah blah blah)
-Loves the shape sorter.
-Fascinated by paper and any sort of writing utensil
-Loves the slide. More of a fan of the slide on the play set. Seems to think the stand alone baby slide is beneath him.
-Is almost able to climb up the net ladder on the play set by himself!
-Is a natural with the baseball tee in the backyard. Any ball works--football, basketball, baseball...shoe.
-Loves to drop the basketball through the hoop.
-Loves to jump on the trampoline with JP.
-Loves swimming at the Y.
-Love anything to do with the bathtub!
-Is fascinated by the toilet. Have caught him sitting on the toilet with his feet IN the toilet twice. Yuck!

T will push the buttons and dance to the music. He is not really using it to hear the animal sounds yet.

This also has more advanced modes but we spend most of our time popping the ball in and watching it roll down the ramps. He likes the music but JP tends to turn the volume off.


T loves to scribble and draw. Any pencil or paper found is fair game. He loves to use the Doodle Pro and scribble all over it. He will even use the shapes to make designs.

BOOKS:
T is showing more interest in books. However we just don't get us much reading time in as I did with JP. It is so much harder to carve out that quality time for him. Dad is starting to build a bedtime story into their routine so that should build up his literary time a little more. I've also started reading to both of them during lunch while we all sit at the table.





WORDS/ACTIONS:
(against my better judgement I will include these...I'll try not to over analyze)

Daddy, BaBa (bottle), ball, I did it!, Bye Bye(with a finger wiggle), baby, straw, bath, puppy/dog, all done, Mama, head, backpack, car, duck, cup, more, peek a boo, noisy/sloppy kisses, blows noisy kisses, touches head during "monkey jumping on the bed", wags finger no during the "no jumping on the bed" part, bike, banana, 1..2.."3", ready, set "go".

Will grabs your nose, eyes, mouth, ears if you name the items.
Will pounce on JP if we say "Dog Pile".
Will chase JP if you yell "get him!".
Will head to the stairs if you say it is time for a bath. Has gotten in himself.
Will head to the refrigerator if you ask if he wants juice.
Will wave bye bye and/or grab shoes if you so much as mention the word "Go". Often will bring you the closest shoes he can find(Mom's, JP's, anyone's).
Will give you his feet if you have his socks and shoes to put on. (unless he is in the mood to run away). May even try to put socks and shoes on himself.
Will bring food from the pantry to Mom. Usually goldfish or fruit snacks.
Will run from you (with the naughty item) when you tell him no.
May say "moo" if you ask him what a cow says. May say "baa" for the sheep. May say "roar" for the bear. May say "roar" if you call him T-bear which seems to be a common nickname for him.



Shamefully I will include these...I hope they are nothing but collective moments of paranoia but I need to document them for reference.

Fear of the parachute at YMCA class (now will sit on it. Has been under it-under protest)
Fear of the tunnels and forts at the YMCA class. I put him inside them and he just stood there screaming. (now will climb through the little tunnel at home. Did finally do one tunnel at Y)
Fear of the plastic bubble wrap all the other kids were jumping on at the YMCA class
Huge tears during JP's OT when he tried the "flying apparatus". It is very noisy.
Fear of the trampoline in our backyard. (NOW HE LOVES THE TRAMPOLINE!!!)
Won't look in the sky when I point at an airplane. They are very noisy yet he is oblivious. (still oblivious...it is the weirdest thing! These planes are LOUD and yet he still won't look up into the sky.)
Seems really bashful around other people. (Yet will interact and play along side other kids)

However, every time I mention any concerns to a fellow autism parent, he will show off around them. He has had great eye contact and babbles with one friend and just yesterday he gave me a long burst of words when I said it was almost time to leave speech. It sounded like...garble garble babble babble outside. And he proceeded to walk over and climb into his stroller. Today I believe that I am being paranoid. I think he is doing fine. Of course he is not an early communicator but I don't think I am specific warning signs.

Bye bye baby!

January 7, 2005. That is the day my baby's babyhood disappeared. That is the first day he stepped foot in a classroom. He was barely 3 years old. As with all the other parents who send their child off to early intervention programs, I stressed about whether I was doing the right thing. All this activity and work seemed so overwhelming for a baby. He was still a baby!

I had read all the literature. I knew that early intervention was critical. I believed that he needed more help than we could provide alone. I knew that he needed socialization. I knew that he needed to talk. I knew that he had to go...

But it was so scary putting my child on a school van and waving goodbye knowing that he couldn't speak for himself. My mommy brain was filled with scenarios of him wandering away when no one was looking. He wouldn't be able to tell them that his name was JP. He wouldn't even be able to say that he was in Mrs. D's class. I worried the van would get him to school and the teachers wouldn't know who he was. I figured they would be checking his underwear to see what name was sewn in them. (Just kidding...I don't know how to sew) Putting him on that school van was the hardest thing I had ever done.

That is why I didn't do it. We chickened out. Dad took him to the classroom his first day. We wanted his first experience of school to be positive. We were concerned about the van ride being too traumatic. We believed the hours at school would be a positive experience and that the van would be less scary if he knew it was taking him home to Mommy. He could ride the van to school after we had success with the other parts of the plan.

I prepared a social story. We read it over and over again. He really seemed to understand that he was going to school to play for a few hours and then the van would bring him home to Mommy. Dad took him to school that first day and got him settled. It helped that he loved shapes, numbers and letters. The walls were adorned with all his favorite things. The teachers went over his social story with him. When it was time to go home, he climbed aboard the van clutching his social story with the picture of the van taking him home to Mommy. He did amazingly well that first day. Probably better than his parents.

He really adjusted to school like a trooper. I will always remember sitting on the front porch singing our corny song while we waited for the van to arrive. As he learned to talk more he started singing with me.

Today is a day we go to school. Go to school. Go to school.
Today is a day we go to school. Early in the morning.

The school van comes to take us there. Take us there. Take us there.
The school van comes to take us there. Early in the morning.

While we are there we laugh and play. Laugh and play. Laugh and play.
While we are there we laugh and play. All through the morning.

Then the van comes to take us home. Take us home. Take us home.
Then the van comes to take us home. All the way to Mommy!

Well, I have since come to terms that in order to have a childhood my son had to relinquish his babyhood so early in life. All of his activities have taught him to tolerate/appreciate other people and the basics of how to be a social being. Yes, we have a long way to go but because of his experiences these past 2 1/2 years he now has a chance at life. He may not have had a carefree toddler existence but I really believe that he is now going to have a fairly normal childhood.

May 25, 2007. Today was JP's last day of preschool and I can't help but reflect on what happened to his toddlerhood. Like the parents of all the incoming Kindergarteners, I am in shock that my baby has grown up. School! How can my baby be in school! I shouldn't be surprised. I've spent 2 1/2 years preparing for it. This is the first milestone I had carved into our long term autism battle. Mainstream Kindergarten. Check. We've accomplished that.

I am very proud of the the child JP has become. He is a smart, beautiful little man with a heart of gold. But why does time have to go so fast? We spend so much time thinking about how to prepare him for a field trip or for a trip to the dentist. We plan and prepare. Plan and prepare. Sometimes I hate that we get so busy with the planning and then are so hyper vigilant during the event that we don't even get to absorb the experience. I hate that autism has taken that privilege away from us. I vow to try to slow down and cherish those moments.

I can't believe that my baby has grown up on me. I know it is happening. I have charts up the wazoo showing his developmental milestones. We've been commenting on how tall he is getting. Freckles are starting to pepper his cheeks. But somehow, today his maturity hit me right between the eyes. I watched him and his classmates walk to the park for their final fun day. I watched him accept his diploma from his teacher and give her a hug. He loved up on his speech path and showed a real connection! He really is a little man. Wow! He has come a long way in 2 1/2 years!

Although I miss my baby, I am loving this amazing little man!

Feeling a bit hypocrital

I am feeling a bit hypocritical these days. It is a really long story and truthfully I am not comfortable providing much detail because a couple of my visitors will know who I am talking about. I posted about this friend a few months ago when my frustration level reached maximum. I ended up pulling the post afterward because I wasn't comfortable sharing what I did when some readers knew the people involved.

The quick and easy background to this story is that this is a fellow special needs mom who is having a very difficult time. We've known each other for about 2 years since our oldest children were in the same early intervention classes. Both of her children have IEPs. Both are still pretty much non-verbal and in diapers. They are 5 and 4. Mom graduated high school but was in special education. She means well but has trouble seeing the big picture and following through on things. She asks me lots of questions about what we do for JP and seems interested in trying them but she just can't pull it together. I've loaned her books. I've photocopied pages. I have helped her make sticker charts and visual schedules. I've answered the same questions over and over again. Finally out of desperation (and frustration) I decided that I didn't have the energy to keep beating my head against the wall. I've referred her to local resources to try and get other hands involved. But now some of those local resources are sending her back to me.

Recently she has been fighting the school on an accomodation they are employing for her oldest. I think she has been "fighting" this all year. In my opinion, it is a necessary accomodation for the child. But Mom refuses to accept the talking device because she feels that it has decreased her childs verbalizations. Mom learned to talk without the device and is sure her daughter will also. She thinks the device will cause her daughter to not learn to speak for herself.

A few months ago I started an Autism Support group for families in our school district. We have about 10 families. We are including her even though her child does not have an actual autism diagnosis. Her children are very similar and the family is very much in need of a support network. She brought up the issue to the group and we tried to give them the moral support they needed. Ultimately we encouraged them to find an advocate that can listen to the facts and make an unbiased decision based on what is best for her child. Also, we strongly encouraged that she schedule the meetings with the school at times when the husband and her mom(grandma) could come with her.

They had that next meeting and the school explained why the child needed the communication device. Dad and Grandma agreed with the school. They whole heartedly agreed that it was in the child's best interest AND that they needed to get one for the home. Mom called me upset because they had turned on her. I then had to try to gently explain that if her daughter was actually forming sentences on this device than it was a GREAT thing! And she most certainly should have it in her home. For some odd reason my saying it seemed to bear more weight than her husband or mother.

For awhile I was losing sleep over the issues of this other family. I was stressing over how to convince Mom that she needed assistance and frustrated because there is no one to provide that assistance. For a while I just rolled up my sleeves and started trying to help her learn how to help the kids. I gave her a handout on discrete trials and physically showed her how to do them. We listed some goals to work on. I gave her a sticker chart on self dressing skills as well as a stack of stickers.

Unfortunately after about 9 months of this I had to pull back. I felt guilty but I had to do it for my sanity. I have my own children who need my energies. I feel guilty about this but what else can I say. My children have to be my priority. I've been trying to fade back. I've been trying to get her in contact with advocacy organizations.

(So much for my short synopsis of the story.)

Anyway, here is the issue. She has talked to a few of the organizations. One in particular is a Parent Adovcacy organization. They talk with you but are not able to represent you in your meetings with the school. She asked. You want to know what they told her? "Why don't you ask your friend, MWAM, to attend your IEP/Placement meeting with you." What the hell! I guess that plan backfired!

So we met at the park a couple weeks ago for a playdate. She proceeded to pull out her child's verification paperwork and IEP. She handed them to me and explained that the advocacy people said that I should attend her Kindergarten placement meeting with her. "Here you go", she said. "The meeting is next Tuesday."

This is where I feel hypocritical. She sees that I have gotten my son included in a general ed Kindergarten. The school and she are not agreeing on the proper placement for her oldest. They recommend a special ed room. Mom wants mainstream. Mom wants what JP is getting and does not see that JP's placement is different because JP's needs and skills are different. In fact, this is a hard pill for me to swallow but she feels that since JP has autism and her daughter does not then her daughter should be better off. It's not right for JP to get a "better" placement. And no those are not my words. Those were hers.

I stammered and tried to avoid the discussion about attending her meeting. But she brought it up 3 times and wouldn't let me off the hook. I told her I'd have to talk to my husband to see if he could take time off to watch T. I told her I didn't think it would be likely since he was so busy at work. I felt like an ass. She needs someone she can trust. She seems to trust me. But I CANNOT take on responsibility for her children.

Also the biggest problem I have is that I agree with the school on this placement decision. I worry that if I sided with them at the meeting that she would feel it a public betrayal. I also selfishly worry about harming my relationship with the school. I don't want them to think I am the one pushing her to put her child in an inclusion setting. I know inclusion is not the right fit for everyone. (On some level I do believe in inclusion for all, however her child has severe anxiety issues and can't even handle interacting one on one much of the time. I cannot imagine what will happen in a room of 25 Kindergarteners! In my opinion, a regular education classroom is not the right place for this child right now.)

My fear is that she will use my name and the schools will think I am the one encouraging her resistance. Part of me considered going to the meeting just so I could make it clear to the administrators that I am not advocating inclusion for her child. As I mentioned before the Special Ed Coordinator is my biggest obstacle and I don't want to alienate her. I selfishly worry that they will blackball me as a trouble maker. I imagine them saying, "See what happens when you give one person inclusion...everyone expects it." Then they will become more resistant to our requests.

I did eventually tell her that I could not attend her meeting. I gave her another phone number for a state advocacy organization in a nearby city. And I did tell her that I wasn't so sure that inclusion was the right decision for her child. I know that she didn't like what I said. Mostly I explained that although JP is being mainstreamed I am having to partner with the school to get things done. I have worked hard building this relationship with the school. I explained that she has hurt her cause by her refusal to employ the communication device at home. (She now has the device but isn't using it). I encouraged her to develop a plan with the school with the stated goal of having her child included in 1st grade. If she works with them toward that goal then it just might happen.

So here lies my moral and ethical dilemma. How can I say I am about advocating for all children when I feel like I am turning my back on this family. Yes, I am giving them advice. Lots of it. But where am I when they need someone to step up. In my heart, I know I have done everything I can. I have tried to "step up" so many times that I have bruises from falling down.

A few months ago I decided that for my sanity, I had to draw the line. I started being less available. Then she upped the ante with the request to help at the placement meeting. At times this makes me feel so hypocritical. How can I justify doing all these advocacy attempts to help the families that just need that little boost to help themselves and then turn my back on the family that truly needs someone to hold their hand? In my head I know it goes deeper than holding their hand and I am not qualified or able to walk them through the special needs journey. It is my heart that I am having trouble convincing.


*******
I sat down this morning to post this because I am trying to build up my energy to call her back. She called last night when I was out. The meeting was yesterday. I am anxious to find out how it went but still dreading making this call.

Reflections

Oh my! It has been forever since I've been able to sit down at the computer without a child hovering underfoot or with more than a 10 minute window of opportunity.

Life is going well. I have lots of thoughts percolating but I think I am going to just run with an informal list of events.

1. Soccer Equipment = Ball, Jersey, and Coke

JP did pretty well this year. Last week was his best by far and it was a very interesting experience. Before the game, he asked for a Coke. (I really don't like him drinking pop but he REALLY gets a kick out of it. Can you say REINFORCER!) Without giving it much thought I said, "If you score two goals at soccer than you can have a Coke."

I should explain that it pretty much works out that each child scores two goals at every game because the "game" part of soccer is where each child takes turns dribbling down the field to the goal. JP does awesome with the first half hour of practice where they do drills. He actually has pretty good motor skills. However, when it comes to the half hour game he can't tolerate being in the midst of all the chaos. (Imagine two teams of 9 little people who each have a buddy as well as two coaches . Now mix in an occasional parent on the field to "motivate" their child)

Yeah, he wants no part of that. Typically when it is his turn to drive down the field he will freeze up and refuse. His buddy will kick the ball ahead of the group and he may/may not scamper ahead and finish the task. Most of the time he is tripping over his feet to get away from the crowd.

Last week, when it was his turn he put up a little fuss. Then his coach reminded him of his "Coke" agreement and he marched right up to the ball. He gave it a swift kick, kick...and a score! I swear it was like 3 dribbles and a score! It was amazing! Apparently a little distraction took his mind off of the mass of people watching and cheering him. Of course after his second goal he was done playing and proceeded to go search through my purse and T's stroller looking for his "Coke". He was very proud drinking his Coke after the game!

2. Soccer = What it is all about

Yesterday was his last game for the season. It was against the team we played on our first season in the league. We liked the team but due to a bit of reorganization last year they moved us over to a fellow Autism Mom's team. She was the coach and probably pulled some strings. I was happy to move to this new team but also sad to leave the old.

I really didn't get to know them too well but they were all very kind about our "sensory" issues. I kind of felt out of place as almost every other child on the team had Down Syndrome. Their difficulties were much different than JPs. I think a few of the the parents were quite fascinated how this boy who looked so normal and ran circles around the other kids during drills could so completely shut down during the game portion.

One of the biggest obstacles for us on this team was that they did a "celebration tunnel" at the end of every game. The parents all formed the tunnel and all the kids came running through it screaming with excitement. Not JP. We usually cowered off to the side. I did get him to go through a mini-tunnel that consisted of 2 (Mom and Dad). Finally the last week of that first season the coach yelled out to JP and asked him to go through a silent tunnel. All 30+ people were stone silent while I walked my quivering son through the tunnel. He was terrified but thrilled at the same time! That was one of the neatest experiences of my life.

Yesterday, this team made that same tunnel and called out for JP to take his walk through it. The coach came over and took his hand and walked him through it along with JP's Buddy. I stood on the side watching it all unfold thinking what a wonderful gesture it was but doubting that JP would do it. I started walking out on the field to coerce him through it. By God if they were going to make such an effort we had to give it our all! Then I saw JP reluctantly take his old coach's hand. I watched in awe as he walked down the silent tunnel with a huge smile! I watched it through my blurry eyes.

3. The end of a wonderful school year

Friday is our last day of school. I am going to be so sad to have it end. I absolutely love JP's current teachers and this classroom set up is exactly what he needs. I am racking my brain trying to come up with a suitable thank you for his teachers. Nothing will be adequate.

4. The start of a good thing?

JP's new school team is supposed to be visiting his classroom this week to get a peak at him in action. I am eager to hear how it goes. His current teacher emailed me to follow up on Kindergarten Roundup. She wondered how he thought it went and if I had an insights on how it went. My favorite quote was, " I enjoyed his company on Friday and thought about him a lot this weekend. Hopefully it was a positive start for him." I am really excited to see how this plays out. She seems really interested in working with JP and I feel like we have a good relationship going. The speech path has also followed up with me. I feel like they are really gearing up for us to be there next year and taking our issues seriously.

5. Garage Sale - Not worth it.

Not much else to say. It wasn't very productive. But oh well. We gave it a try. All I can say is that Goodwill made out pretty well.

A trial run at Kindergarten...

Today was Kindergarten Roundup. This was a trial run for JP at his new school with his new teachers and 80 of his newest best friends. It was 2 1/2 hours where the kids could meet the teachers and the teachers could get a look at the kids. I've been procrastinating thinking about it. I just kept focusing on Wednesday's IEP and pretending that today wouldn't come. In the back of my mind I was thinking that it wasn't really that critical for him to attend. But then I knew that I should want him to...

At the IEP, his current teachers asked if JP was going to his Kindergarten Roundup. Mrs. D (current speech path) asked if I thought a social story would help him with his morning at his new Kindergarten. Of course it would but I explained that I have been in denial that the day would come and hadn't really prepared anything. She offered to do so. She sat there and talked to the Kindergarten teacher about the schedule and jotted down notes.

JP went to school the next morning and came home with a beautiful story about the fun time he was going to have at Kindergarten Roundup! Now I need to explain this time line so that you truly understand how phenomenal this was. Our IEP finished up at 5pm on Wednesday. On Thursday at noon, JP came home with a printed and bound two page story taking him step by step through his day. This was the NEXT MORNING ! She is so awesome!

Oh, and it gets even better. Thursday morning at 8:02 am I received an email from Mrs. M, his new speech path at his new school. She had attached a picture of herself so that JP could get to know her. (She was going to be his shadow at Kindergarten Roundup the next day.) Two hours later she also emailed pictures of his teacher, resource teacher and the resource paraprofessional.

So today was the big day. JP was the little trooper and went along with what we told him he had to do. We marched up to the front doors of the school and went in without a fuss. We looked around the room at about 8 teachers and he picked out Mrs. M based on her picture. The adults talked for a few minutes and then he accepted her hand and went to the classroom with her. No fuss. Just another day in the life of JP.

I sat on a bench for the next 10 minutes or so watching these other little boys and girls walking up with their parents. The excitement was evident on their faces. Some were scared but they had that scared look like you have right before you plummet on a roller coaster. They were nervous but excited at the same time. It is like they knew that this was the first day of the rest of their lives.

JP reportedly did well during the session. He directed much of his interaction to the adults but here was a really cute story they were eager to share with me. I think it endeared him to them. And it is one that I need to preserve in my memory bank...

JP is playing when another little boy approaches. The little boy proceeds to tell JP that he is his new best friend. JP looks at the little boy and knows that something needs said. The wheels are turning but he just can't seem to decide what to say...so he yells "Boo!". Twice.

The teachers coordinated a second attempt with this little boy and the second time went much better. Reportedly the boys built quite a road together and JP even negotiated during the design phase. The adults were impressed (once they stopped giggling about the Boo)!

Yeah, without a doubt, we need some social guidance! But I am hopeful! Day 1/2 and the teachers are now aware of what they have ahead of them. And I think they felt a little charmed by my prince.

Gut instincts

We all have them. We all live by them. As a mom of a child with special issues I have learned to embrace them.

We had phase 2 of our IEP/Kindergarten placement meeting yesterday. It was a bit overwhelming. If I recall the faces correctly we had 9 school reps. Our current teacher and speech path. The Special Ed Coordinator for birth to 5 kids. The Special Ed Coordinator for the elementary population. The principal at our new school as well as the psychologist, speech path, resource teacher and JP's actual Kindergarten teacher. I went in intimidated and worrying that it was going to be 9 of "them" and 2 of "us".

However, it really felt like 10 of us and 1 of them.

First I must say that I love our current teacher and speech path. They truly understand what makes JP tick. And it is so obvious that they adore him. They talk about his quirks as though they are precious and not "problems". They stated over and over again that he can learn if we break it down into components that he can process. They talked up his response to social stories. My favorite quote went something like this... "I've done social stories for children before. But with JP it is like, "so this is how they work!""

As a mom, the hardest part about turning over your child is that you need to feel that they are being loved and cared for. Without a doubt, JP has been in amazing hands this past school year. We are truly going to miss Mrs. T and Mrs. D.

A few months ago I met with the principal, psychologist and speech path at our new school. We talked about JP and my concerns. They were very receptive. I was encourage but true to my cynical self I held back hope. I know that nothing is locked in until it is written down in the IEP. So my first gut instinct was positive but I refused to listen to it until everything came together.

Well, yesterday it really came together.

Now, I did request a 1 on 1 paraprofessional. I did not expect to get that. But I truthfully didn't even think we really wanted that. What I want is support and I want to know that they are legally bound to providing that support. But I don't think JP needs someone to hold his hand. He does however need someone to nudge him from the shadows.

Now, there is a bit of unease still because although we have a plan in place we are scheduled to meet after 4 weeks of school to reassess. I think they hope to reduce supports but I sort of fear we may have to commit them long term at that point. Hopefully we won't have to increase them but we are all looking at this with a "wait and see" attitude.

So here is the issue. We were gearing up for the discussion about supports so I chimed in and asked for a few minutes to speak. I expressed that since much of the team before us had not met JP and witnessed his progress I would like to show them what his past couple years have been like. I explained each "therapy" and how each and every one of them utilizes one on one adult attention. I reinforced that I am not here today to demand 40 hours of ABA like many autism parents request but I wanted to show what kind of structure we had to provide to get JP where he is at today. Here is a visual of JP's current schedule. Unfortunately, I don't think my graphic scanned in very well.

I then expressed my concern that now that he is in Kindergarten all day we won't be able to continue these afternoon therapies. I'm not "attached" to these particular therapies but I do firmly believe that JP needs this much of one on one involvement. Here is how bleak his Kindergarten schedule looks!

Taking those 30 hours out of his weekdays takes away the opportunities for us use most of these services. OT, the speech group, and the college clinic are all day time activities. They won't be available anymore. Ultimately, I can figure about 5 hours we will be able to continue.

I didn't come right out and say it but my point is that we (I repeat WE) have stepped up and provided JP the services he needed to keep him engaged and growing. Now that he is in all day school, the school MUST step up and do their part!

I also illustrated the progress through our years post diagnosis. JP was diagnosed in the fall of 2004. In January of 2005, he started in an early intervention classroom. He spent 5 months in a class of 10 special needs kids, one teacher and 2 paras. At the close of that semester, his IEP was drafted with a language goal of stringing 2 words together. That summer we started a home program pulling goals from an ABA manual. We hired college students as well as providing the therapy ourselves. Towards the end of the summer we adopted the ABLLS (verbal behavior program) and took off running.

When we returned to school in the fall I requested a new IEP as the old one was not appropriate. JP's language had grown tremendously and I wanted our goals to reflect his new levels. We found that he was stringing 5-6 words together at this point. Here is my data to show his level in August of 2005. He was3 years 8 months at this point.

We continued in the same classroom through the 2005-6 school year with the same teacher. (I should note that I requested a transfer to a different teacher but it did not get honored due to staffing changes in the main office. Technically, our request fell through the cracks.)

Sadly, when we met in the spring of 2006, the IEP goals were still considered to be "in progress". So despite having the entire school year in a special education classroom JP had not mastered his list of 8 goals.

However, during that same time here is the growth we can document from our home program. Here is his ABLLS update as of April 2006 when he is chronologically 4 years and 4 months.
If you aren't familiar with ABLLS, each box on the graph above is a measurement for a task. To illustrate here is one of the more advanced receptive tasks:

Task C41: Select single items with two specified characteristics. Can the student select a specified item which has two specified characteristics (The big red ball). All 4 squares on the graph (for task C41) will be colored if he can do 20 combinations, 3 squares will be filled in if he can do 10 combinations, 2 squares if he can do 5 combos, or only 1 square if he can do atleast 2 combinations.

(**As a note, James Partington who created this program recently commented that this chart would likely be completely filled in for a typical developing 3 year old**)

Then we received placement into Mrs. T's classroom for the 2006-7 school year. This was an integrated preschool with lots of socialization opportunities but also a great teacher! We have continued our home program although much more modestly. Truthfully we ran out of money. I still have one college girl working for us but she only comes once a week for 2 hours.

As you can see on the above schedule much of his current therapy is outside the home.

Here is is latest assessment as of February 2007. He was 5 years 2 months.

At this point I got off my soap box. I had made my point. I have data that my son can learn if you teach him appropriately.

Here is what the Special Ed Coordinator for the Elementary population said, "Well, I don't have a problem if you want to put him in school part day and continue your therapies in the afternoon."

It took me by surprise because everything had been amicable and the school staff seemed excited to roll up their sleeves and start working with JP. I take her comment as a corporate type who is looking at the cost to supply this one on one attention. I understand that...but I also understand that it is their job. I regret not taking the discussion down the FAPE and IDEA route but I didn't feel that it was completely warranted at this point. However, my gut tells me that 4 weeks into the school year we may need to be prepared to go there.

However, my gut is also telling me that it is in fact, 10 to 1. Everyone else on our team was amazing and seemed committed to make Kindergarten successful for JP. I am optimistic!

A Behaviorist's Utopia

Okay, let's admit that there are days when our kids have behavioral issues. Even on their best days they are one "sensory attack" from having problems. That is the nature of their disability. But to understand what provokes their behaviors you have to be a mind reader. Even if you watch them like a hawk you are bound to miss that critical moment that starts the meltdown.

Another blogger friend is in the midst of dealing with behavior issues. Her son is a good boy but he is acting out at school. The school just keeps removing him from the room. She gets a nice little slip saying what he did wrong but no explanation about why he acting up? Ultimately, he is doing fine at home. Definitely, not so fine at school. So what is setting him off? Is it a peer? Is it something with the teacher? Is it because of communication issues? Is it a compulsive behavior? Is it due to escape or avoidance? Is it attention seeking? How is she to know? She isn't there! The only people who can know are in the classroom and they aren't figuring it out.

Truthfully, she is in the midst of what I fear happening for us next year. I worry about sensory overload and a teacher that doesn't know how to help JP regulate. I worry about a teacher (like we had 2 years ago) that doesn't get autism and assumes that his behaviors are him being bad rather than him trying to cope. I fear a teacher that doesn't realize that we have to help him cope with these situations and learn how to react appropriately. I fear a teacher that has such low expectations that she assumes he can't learn how to react in that environment. I fear a school district that thinks it is easier to remove him than to roll up their sleeves and figure out what he needs in order to succeed.

Well, I was trying to urge this mom to push for a behavioral assessment. I think they have gone down the path and she seems in the know. I think she is at her wits end. But her situation has made me think back to this awesome presentation I heard last month at our State Autism Conference. So instead of leaving the "comment from hell" on her site I just decided to throw a blog posting out here.

The presenter was James Ball. He is a board certified Behavior Analyst and is a private consultant working with children on the autism spectrum. He is from New Jersey. He was a fascinating speaker and I have to admit that I wasn't that gung ho about sitting through an ABA presentation. I am not an ABA fan in its strictest sense. I didn't have high expectations.

But I was thoroughly surprised with his presentation. He was a very good speaker. Truthfully, what surprised me most was that he seemed to mirror my thoughts toward therapy for our children. He expressed that we need to adjust the therapy so that it works for our child! Most ABA types have the reputation of declaring it to be ABA or the highway! He urged us to recognize that the premise of ABA and discrete trials can be done in any context. On the floor while playing with their train set or in the shopping cart at Walmart. ABA does not have to be about a sterile table environment. It is about breaking the task down and teaching it. It is about understanding the behavior and helping improve the appropriateness of it.

As a side note, I also need to share a jaw dropping experience. He was talking about behaviors and behavioral assessments and giving all the "mainstream behaviorist" talk when all of a sudden he said something that blew me away! "When you have a child exhibiting behaviors you need to make sure there aren't any medical issues at play. Kids get out of balance with yeast issues or urinary tract infections and they might very well be in pain. It does them no good to try to "train" them to behave if you don't first help them get rid of the pain!" He said that 3 years ago he would have blown off biomedicals as hocus pocus but he has seen it transform a child enough times to make a believer of him. Now he went on to explain that biomedicals don't cure the child but it makes them more receptive to the learning environment and of course they need done through a physician. I didn't go to this presentation looking for validation that we are doing the right things but I left feeling at peace with our diverse therapy options!

Back on track to my discussion. He spoke about a product called, B.I. Capture. This looked amazing. It is still in the pilot phase (I believe) but I want it in my schools...now! Here is a link to a news story that summarized it pretty well.

http://www.talkautism.com/Components/Video/Video.aspx?v=82

I know that our teachers are overwhelmed with a room full of kids. They can't see every thing that transpires in the classroom. And expecting them to answer why our children act out is a lot like asking them to read tea leaves. However, this application allows them to click a button at the time of the event and the TiVo camera in the room captures the moments preceding and following the outburst. The data is then sent of to a behavioral specialist who can then look at the entire scenario and make a determination as to what may have caused it. Then they can formulate a plan to fix the situation and help the child!

I think this is huge! Like I said, I want it in our classroom. Please let me know if anyone out there is using this product! I imagine it'll be used in those autism schools where the professionals already "understand" autism. I just think it would be SO INCREDIBLY helpful for those of us out here in schools where are teachers are not autism experts. This would make it so much easier for our schools to seek "professional" help rather than try to wing it themselves. I can only imagine how much our kids would benefit!

Scripting can be beneficial

Okay...so scripting can be our friend.

All in all, I can't complain about JP's diet. He has a variety of foods and they typically are of the healthy variety. Crazy as it sounds I have had to bribe him to eat cupcakes or cookies. In fact, he typically will refuse these treasured treats that are so popular in the 4' and under crowd. He loves fruit and will eat some vegetables (green beans and broccoli). Meat only passes through his lips in the lunch meat variety. Occasionally he will eat dark meat baked chicken. Rarely will he eat hamburger. These past few months I finally got him to eat Tyson Chicken nuggets. But he still won't eat nuggets at a restaurant. He won't eat sandwiches. He'll eat the lunch meat, the cheese, and maybe the bread but he must eat them all individually. After all, food that touches other food is now inedible!

Well, the past month he has been visiting the Playhouse Disney website again. He used to love this site but since he is in school every morning he doesn't really get to watch the shows anymore. In fact, most of these shows hold no interest for him. They keep his interest for the 30 second web clips that he could play repetitively for 30 minutes but a 30 minute streamlined version found on Playhouse Disney just isn't as worthwhile.

One show that he never really took to was Charlie and Lola. Personally I didn't really care for it. But since he has been revisiting these "friends" online he has taken a shine to Lola. She is a bit obnoxious if you ask me but I guess I am learning to love her as she has taken over my son's persona.

The other night at dinner I asked what he wanted to eat. He said, "I want peas, carrots and fish fingers". Curiously I followed along. I put raw carrots, peas and chicken fingers on his plate ( we didn't have fish fingers). He then said in a British accent, "I do not eat peas or carrots or fish fingers. " He speaks the truth. I had never seen him eat any of these things.

But I followed along and I said, "But JP those aren't carrots. They are orange twiglets from Jupiter or turbo charged swar racers."

He then picked it up and took a bite.

"Oh well, in that case...not bad!" (and he ate it!!!!) "But don't even think about giving me a pea!" said JP/Lola.

I replied, "but JP those are not peas those are green drops from Greenland or treasure chest glow balls".

"Oh well in that case. Quite tasty" (and he ate them while making a very yucky face). "But don't even think about giving me a fish finger!"

"But JP those are not fish fingers those are ocean nibbles from under the sea or yum yum flappers from Yucatan." said Charlie/Mom. "Hmm yummy" he said in his British accent and proceeded to eat his foods. All of his foods!!! All gone!

This was his desired meal for almost a week straight. Of course I had to tweak it a little bit and we ate broccoli trees from the hundred acre wood and apple crescent moons from the evening sky. As long as we threw it into a goofy visual AND use our British accents he went for it!

Here is a link to the live story. I should warn you that you might find it redundant after reading my blog!

Charlie and Lola's "I will not never ever eat that lunch" story book.

Today, I tried to make him eat a Keebler E.L.Fudge cookie. We fought. I tried my British accent. I won after about 30 minutes by holding his drink hostage. He gaged it down like it was poison. I guess somethings a British accent can't even overcome.

A hero party

Last night JP was resistant about putting on his pajamas. He wanted his Superman PJs yet again and I told him they were dirty. We searched through my pile of clean clothes to prove that they weren't clean. I tried to offer him his Incredibles PJs but he wasn't interested.

Then brother came out of the bath wearing his Incredibles pajamas. JP decided that perhaps he could wear his too. So for the remaining hour of play and cuddle time we hung out with Dash and Jack Jack. (If you are not familiar with the Incredibles: the children are Violet, Dash and Jack Jack is the baby).

JP does tend to have an identity crisis. Sometimes he is Mr. Incredible and other times he identifies with Dash (the son).

Here is Dash. Don't you see the resemblance?



Here he is as Bob Parr in his corporate insurance man attire. He likes to close his shirt and introduce himself as Bob. Then he rips it open and claims to be Mr. Incredible.
(He also does a mean Superman/Clark Kent impersonation!)

So anyway the focus of our discussion was how cool it was to wear the same pajamas as T and both pretend to be superheroes. I thought this was a pretty innocent conversation. I suppose in his mind it stayed innocent but my dirty mind just couldn't handle it...

JP: "You will take your shirt off and become Elastigirl. Then Daddy will take off his shirt and become Mr. Incredible. Then you will have a hero party."

Daddy thought it sounded like a good idea!

**Elastigirl was Mrs. Incredible's alter ego. She is stretchy and bendy like elastic. And the hero party comes from Christopher Robin throwing a hero party for Pooh when he saves Piglet. However, that isn't the kind of hero party Dad was hoping for...

April...all hype and no answers

I am feeling all twitchy inside. I have been out of touch with the blogosphere for so long. April has been a crazy month. Ultimately it has been dedicated to preparing for our IEP, the re-verification process and Kindergarten placement. It feels like there has been so much hype yet so little done.

Our initial meeting was April 26th. This was only with our "current school staff". This was JP's Special Ed Preschool classroom teacher, Speech Path, School Psychologist, OT, and the Special Education District Coordinator. I consider us blessed that the Coordinator was there. Typically they pull the "teacher serves as the district rep" bit. Apparently my request for a paraprofessional in the mainstream classroom drew her attention.

Unfortunately, that first meeting didn't get around to that discussion. I brought it up once but she asked that we hold off on that discussion until later. So although we were together for 2 hours I can't say that much came from it. I did find out that JP has autism. Surprise! No really, I was sort of surprised that they didn't argue the diagnosis. I have this fear that due to his strengths people will overlook his weaknesses. It actually happens all the time but fortunately this was not the case.

He did well with their assessments. Of course he loves to show what he knows. He loves to learn. Well, I should qualify that to say that he loves to learn in a one on one setting. If you put him in a group setting he gets ants in his pants. He hasn't shown us that he can learn much in that setting. It is just too overwhelming.

All in all, our meeting was amicable and I really must say that I love his current teachers. They really get him and they do welcome my input on his goals. And we all agree that his appropriate setting is a mainstream classroom. I feel that his teachers agree that he needs supports. The issue seems to be more with the administration. I know that my teachers can only say so much and I know that I can't expect them to fight the fight for me.

Our debate seems to come down to a discrepancy between the concepts of "supports" and "one on one aide". The school district that I live in does not do paraprofessionals. They don't assign an adult to a classroom for one specific child. If our kids can't cut it in the mainstream then they get placed in a multi-categorical special ed room. Truthfully it seems a rarity to have a special needs child placed in the mainstream. I know of 4 other autism families jumping through the same kindergarten hoops right now and they were all routed to the multi-cat room. However, as I have broadened my parent references to include a couple new "Asperger" families I am finding that these kids are in the mainstream--but with very (did I say VERY) little supports.

Now please understand that I am a "negative nelly". When someone says "maybe" I hear "no". When we talk about assistance for my son during his school day that doesn't really jive with their talk about a resource room. The school suggests that maybe the resource teacher could spend some time in his mainstream class alongside him. Sure, I'll take that but what about the other 6 hours of the day?

Who is going to be there to straighten his pants because he won't unsnap them when he goes to the bathroom. He just yanks them down and then can't get them up over his underwear when he is finished. He doesn't care or even notice. He could go all day with his waistband below his underwear. Who is going to be there to help him deal with lunch as well as the 100 other kindergartners. Who is going to help him cope with the NOISES in the lunchroom? Who is going to be there to nudge him and give him the words to use to ask to play with those kids at recess? Is he going to be lone child off to the side running sand through his fingers? Who is going to be there in his classroom when he is supposed to be working on an art project. Fine motor and creativity, ha! If you are lucky you'll get a picture of Winnie the Pooh! Who is going to be there to coax him to write his letters? If they tell him to write an "A" he will likely ignore them. But if they ask him to chose between the red or the green marker to writes his A's then they will likely get a row of red A's. Who is going to be invested in him and realize how to coax him to do these things? Or will they just assume he can't do it because he doesn't do it when they ask the first time? And then soon enough he won't be able to do it at all.

His classroom teacher will have a room full of dramatic neurotypical 5 year olds. They will all be clamouring for her attention. They will want to tell her about their scraped knee or their pet snake. She will have her hands full. Some of these kids will not have been in a classroom setting before. It is going to be a shock to their system. They will need her help. JP has been in a classroom for nearly 3 years. He knows the routine. I can't help but worry that his teacher won't have the time or energy to seek out JP and give him the continual guidance. I hope I am overreacting. But I am pretty sure she is not going to be Superwoman and frankly I don't think she can do it all. JP is a full time job for me and I don't have 20 other kids wanting my attention as well.

The way I see it one of two things will happen. Without an adult chaperon, JP will take up permanent residence in the corner of the room all alone because that is easier than dealing with all the angst and emotion in the room. Or he will get all stimmy and run around the room behind (insert random child's name) who is simply being ornery. (Insert random child's name) may be misbehaving but JP will think it is a game. Now jump forward 3 months and the other children will have adjusted to the school routine but JP will have learned that it is more productive to act out and run around. This may be the only way he gets support from the teacher. The way I see it he will either become invisible or a behavior problem. I fear that the only way to get supports in this situation is to become the behavior problem.

Because of all the work we have done with JP he is academically ahead of his kindergarten peers. We didn't set out to teach him to read. He just picked it up because letters are his thing. Academically JP doesn't really need assistance . He needs assistance learning how to navigate school and his peers. He needs assistance complying and knowing what he is supposed to be doing. He needs to learn that the children do the assignement because "the teacher said so". Yes, I hear the district rep chiming in. "All kids need to learn this!". Yes, I agree. But there comes a time when those other children realize the social ramifications for not behaving in the expected fashion. JP won't pick up on this.

Ultimately, we have a disconnect with the school regarding his needs. I understand that schools are about academics. Not social skills. But I see these things as the same thing. How is JP ever going to do a group science project if he can't learn how to play with his peers. Kindergarten social skills are life skills. These are a foundation to the academic skills he'll need later on. His disability makes it improbable that he will pick these up naturally. He has to be taught them. How are they going to teach these to him in a mainstream classroom without an adult there to steer the way?

I declared Kindergarten as JP's "year to learn how to learn in a group setting". I am just really antsy because I am not sure we are going to get the supports he needs to make sure this happens. My fear is that he will spend a year in kindergarten and do okay. He'll move on to 1st grade and maybe do okay. Then when he gets to 2nd grade we will start to realize that he really hasn't been catching on to the new material. All of a sudden my "academically advanced" child will be performing below grade level and the school will tell me that he can't learn in their setting. They will want to send him to the multi-cat room. Simply put, if we don't succeed with the "learn in a group setting" goal I worry that our mainstream days will be limited.